After over a year without my IvIG because it was deemed too risky for me to go into clinic (due to COVID19) finally it’s been possible to get on a home / self administered Sub cutaneous Ig. It all very new at the moment so bear with me!

I asked on first lock down to be allowed the sub cut Ig but the hospital where I have treatment said I had to ask my local CCG( clinical commissioning group) to fund it. I live in a different area to the CCG where the hospital is based. So I asked and they said ”No”. For over a year have had prophylactic antibiotics instead of the Ig infusions. Then the levels of Covid infections fell. I was having surgery and my haematology consultant agreed it would help post surgery if I resumed the infusions. An appointment was made for the clinic supportive care unit the week before surgery. That was ideal.

Then, due to a faulty cannulation I ended up with something called ballooning where the infusion went into the tissue and my arm blew up like a balloon Scared me! But much reassurance from the clinic matron and one of the doctors I went home with an elevated arm! It finally went down two days later! Not an ideal situation.

Fast forward to my next infusion a month after my surgery. The infusion went well this time. And I got to see my haematology consultant for the first time in 15 months. It was wonderful to reconnect- nothing as good as face to face appointments. He had phoned me every month during lockdown and checked my blood results. But seeing him lifted my spirits. My blood count had really improved and I had got the option of being accepted for self administered Ig at home due to a scheme the hospital pharmacist had negotiated with the drug company.

There is a National shortage of Immunoglobulin in the UK. The strategy is to use hospital infusions only for emergency patients and those on routine infusions can go to sub cut. Fantastic for me as I will only have to go to clinic every three months. So I was excited . Arranged were made to get the kit delivered to my home before my first training session. The nurses would teach me how to self administer and then the following week I would administer it under their watchful eye in clinic. After that I will fly solo self administering at home once a week. Easy! Hopefully it will be!

This week I was contacted by the Homecare group who dispatch the kits. The lady was lovely and went through everything I will receive- a list a mile long! Now I am worrying about storage and the fact they deem I do not need a pump. I was advised by a friend to push for one as it makes the process much easier. However so far have hit a brick wall . Even my offer to purchase the pump myself was denied. But softly softly- I will ask again on my visit to the training.

It’s still early days but if this is a success it will be so much easier than hospital treatment. So fingers crossed I can learn how to self administer.Am not scared of needles as I had to administer anti clotting injections for a week after surgery. My main worry is where do I store everything and will I have to empty my husbands beer fridge to keep the immunoglobulin cool! Watch this space!

Note from Adrian

Many patients in the UK and USA have struggled to get access to either IVIG or SCIG. It seems it is harder for those with blood cancers to qualify for this treatment than for those with primary immune deficiency. And despite Maggie being told that there is a national drive to move people from IVIG to SCIG this is still being denied to many people in other areas!

IVIG is delivered in hospital straight into a vein and is associated with a much higher rate of side effects than giving it into the subcutaneous tissue.

It is a medical justice issue that there should be better access to both of these treatments for blood cancer patients when they need it, and we need to get to the point that the choice between IVIG and SCIG should be made on the basis of what is clinically best for the patient, and what they prefer.

Similarly, whilst nurses may believe that it is “easy” to self administer an infusion from a small syringe whilst very slowly pushing the thick gooey drag into the sub cutaneous tissue, many patients would disagree. If you have sore or weak hands, or if you just cant sustain a slow but quite firm push for several minutes, then a pump is infinitely preferable. And once again, best medical practice should involve the patient in the choice of the administration route.

Personally, I had a nurse give me the first couple of subcutaneous infusions of immunoglobulin by the multiple small syringes method, but when I was given a chance to try pushing the drug in, I realised this was not going to work for me. At that stage my nurse apologised for not having involved me in the choice up front.

Here on blood cancer uncensored we believe it is crucial that all patients learn more about their condition, and how to advocate for their own views to be considered during treatment decisions.

Only certain types of blood cancer are associated with a decline in B cell function over time. This is most likely to affect people who:

• have chronic lymphocytic leukaemia (CLL)
• have B-cell non-Hodgkin lymphoma
• have Hodgkin lymphoma
• have had a donor (allogeneic) stem cell transplant
• have had CAR T-cell therapy
• have had treatment that destroys B cells (such as chemotherapy)
• have had treatment that lowers their number of B cells (such as rituximab).

If you are concerned you may require IVIG or SCIG then do discuss this with your doctor. I will share a link to a couple of longer articles on this subject form before but here are some steps you can take to try and ensure you qualify for this treatment if you need it. As always this is generic advice and must be made relevant to your own specific situation by your clinical team.

1. Ask for regular IgG blood levels to be monitored so you can track any decline
2. Ask if specific antibody levels can be performed after all vaccinations, particularly the pneumonia ones. Even if a vaccination was done a while ago levels can indicate if you were then able to make new antibodies. With some types of blood cancer the ability to make new antibodies can gradually disappear even before the IGG levels get very low.
3. Keep a clear record of all infections, NOT just severe ones. Ask for antibiotics if a bacterial infection is suspected and keep track of how often this is needed. A common misconception even among doctors is the erroneous and dangerous idea that IVIG or SCIG should not be given until someone has been admitted to hospital for infections. This is shutting the stable door after the horse has bolted- we should instead be aiming to prevent life threatening infections
4. Take prophylactic antibiotics if appropriate in an effort to reduce the incidence of your infections, this can sometimes work wonders for some people, and if it doesn’t work can be used as evidence for the need for IVIG/SCIG.
5. As for a review by an immunologist, preferably at a center of excellence if you are struggling to get access
6. Be prepared to appeal decisions and generally “push” to get access.

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Lymphoma Action IVIG information